The goal of the workshop was to give participants a deeper understanding of the potential for four key resources to increase the utility and re-usability of data collected in the ERN (indeed broader rare disease) sphere. The focal tools/approaches were Orphanet Nomenclature; Human Phenotype Ontology; concept of a PPRL (Privacy-Preserving Record Linkage); and FAIR data.

The workshop provided more practical guidance on the use of these four focal tools/approaches, as a starting point towards optimising the value of data in the ERN community – see the ToolKits on the dedicated workshop page